“All my stories from the last eight months tell a story…my scars are a reminder when life and EDS tried to break me, but failed to. A story that says, ‘I survived’.”
šāShe believed she could, so she didāš ~ officially awarded with a Distinction in MSc Petroleum Geoscience, Imperial College London along with being awarded two academic prizes: šBest Thesis Project Prize and šCourse Director Commendation Prize
Utterly speechless is an understatement!! 5 years and 7 brain/spinal surgeries later, Iāve actually done it š± For so long it was a dream of mine, but now it is my reality. All of you who have travelled this journey with me will know that this degree means much more than a piece of paper. It is what drove me each day with my neuro rehabilitations and recoveries. Iāve learnt that you canāt skip chapters in your life story – you have to read every line, every word. You will read things you donāt want to read, you will have moments when you donāt want the pages to end. But you have to keep going to live true to your story. No matter what chapter youāre in, remember to never lose sight of your dreamsā¦because good things are coming. So for the time being, Iād like to relish in this moment for as long as Iām able to until my next chapter beginsā¦ ā¢ Laura Lee ā¢
For so long I was focussed on āgetting back to my old lifeā before I got sick. My mind had not yet come to terms with my new reality or even processed the traumas I had suffered from. At the time, I was determined āgetting my life backā. But I soon realised that this perspective does nothing for us.
I believe that there is power in suffering and chronic illness because itās in these times of pure vulnerability that we learn how to overcome what seems the āimpossibleā, not just for ourselves but for others too.
By experiencing our own pain of āhitting the wallā, we can understand and care for the pain of others. In our chronic illness journeys, we encourage each other to keep fighting, to continue learning, to never give up – but we rarely talk about āthe wallā.
šThe official launch ofĀ @mindbodyedsĀ Charity Promo Video! š
Invisible illness is the very definition of hell. Ehlers-Danlos syndromes are a steep learning curve, and the only way in which to climb, is to have hope for what the future could bring. Because there simply is nothing else. There is no cure, yet.
In actively spreading education and awareness, the goal of our charity is to bring hope.
By providing financial grants and support to EDS sufferers, the goal of our charity is to bring relief.
Through supporting medical research, the goal of our charity is to bring resolution.
Mind Body EDS hopes to be ‘a gateway of hope’, to not just those of us with Ehlers-Danlos syndromes, but also for the future generations of zebras to come.
Itās time for us to be heard. Itās time for us to be believed. United, we stand together and ask you to join us in this battle together, making our invisible, visible š¦š«šš¼
Make a true impact today by donating to our Virgin Money Giving London Marathon 2019 page – help our runner, John Thompson, to cross the finish line!
ā¢ Thank you to The Met Film School from the bottom of our hearts for turning our vision into a reality. We are so grateful for your incredible dedication and hard work helping us fulfil our charityās mission ā¢
Today has been one of those days where I doubted myself over a million times. The last few months I’ve felt this way for completely valid reasons. I’m not saying this for sympathy – I’m saying this for reality – to show you that on the inside I’m just like you. Yes, I may be smiling on the outside, but I’m not invincible. In all honestly, I don’t always have it all together and still have moments when I focus on the difficult parts of life.
Recently Iāve been hit with a lot of disheartening and disappointing news relating to my health (new diagnoses/more surgeries), my graduate job falling through which consequently meant my moving back to independent living in London didnāt happen – this domino effect has caused a tremendous impact, leaving me feel lost and full of grief.
Itās naturally re-opened a lot of insecurities I once had that I’d put to bed a long time ago through many years of CBT (cognitive behavioral therapy), trauma and pain management therapy. Truthfully, Iāve had a lot of days this past month where Iāve felt like Iām not enough. Where Iāve felt like giving up. When Iāve questioned myself and doubted my ability to juggle all areas in my life. I admit that Iāve found this difficult to comprehend because my ālife planā has just crumbled in front of me – or so I thought.
Recognising these thoughts and feelings doesnāt mean youāre failing – it means youāre LIVING. Iām not saying this for sympathy – Iām saying this for reality. Weāre not invincible.
As humans, we tend to live our lives in the āfast laneā so forget to take the time to really stop and honour how far weāve come and accomplished. We tend to reach a goal and then fill our brain with worry about how weāre going to accomplish the next, and so on.
Itās learning the ability to switch your mind from āwhatās going wrongā to āwhatās going right for me?ā mindset. Reminding yourself that youāre doing the best you can, that youāre really living ālifeā for what itās worth.
So continue to turn the page, be motivated, be curious because the biggest mistake you could ever make is to live life like you’ll get another chance to experience it all again.
Be open to new opportunities and change that may cross your path unexpectedly, because maybe everything youāve lived through was all meant to take you to this point; giving you the courage to take the leap of faith, coming to terms with who you are and who you want to be.
Before you give up, learn to make up your mind about what YOU want out of life. Because youāve already survived everything that has been thrown at you so far, and youāll survive it again and again.
Itās time to stop letting our minds play games and begin living our lives through truth, gratitude and appreciation; to beĀ proud and honour the path that got you to today šš¼š¦š« ā¢ Laura Lee ā¢
āOur backs tell stories no book have the spine to carryā ā¢
Itās having the courage to not need all of the answers. Wherever you are right now is exactly where you need to be. Seven billion in this world canāt do everything in exactly the same scheduled order. We are all different with a variety of needs and goals. What is early? What is late? Compared with whom? Compared with what? Remember that your life is not on anyone elseās schedule. Donāt beat yourself up for where you are right now. Itās your timeline, not anyone elseās, and nothing is off schedule.
2019 Iām ready for you: nothing like beginning the new year with my 7th brain surgery – removal of my right styloid and right C1 transverse process to help improve the blood flow to and from my brain š¤š¼š§ š«
After spending 5 hours in recovery ICU, I was finally transferred to M5 ward at Addenbrookeās Hospital. Letās just say that recovery after this surgery has not gone as smoothly as others and unfortunately Iāve suffered from some post-op complications. My swallowing has been tremendously affected due to oedema and possible nerve damage from the surgery site, but we wonāt know the extent of permanent nerve damage for another few weeks once initial swelling has reduced.
Reality of recovery is never simple. No matter how much you try to physically and mentally prepare yourself for it and also for potential complications post-op, sometimes you just get completely blindsided.
Last night was one of the toughest parts to recovery Iāve suffered from to date. Unfortunately, I suffered from a major dystonia episode lasting over 2 hours. Itās been the worst dystonia episode Iāve experience post-op Iāve ever had. My body was uncontrollably contorting and spasming with my torso and head being thrashed withĀ my legs seized up. Iāve never felt so exhausted and fearful in my life all at once. It was traumatising and very painful. Not knowing when the uncontrollable spasms, contortions and pain would end was unbearable, not just for myself, but also for my family members and loved ones seeing me suffer. Finally after 2 hours, an emergency on call doctor came to my rescue and administered a muscle relaxant suppository which immediatelyĀ calmed me down, allowed my body to relax and unwind from my awkward spasming. At the end of it all, I completely drenched the bed with sweat and tears feeling completelyĀ knackered.Ā The unpredictable nature of EDS makes this chronic illness so much more difficult to deal with. But Iām grateful for the medical staff who were able to help stabilise my body and provide relief.
Weād greatly appreciate as many prayers, thoughts and wishes as a family to help us get through this difficult time of post-op recovery.
ā¢Laura Lee ā¢Ā
#zebrastrong #nevergiveup #hope #butyoudontlooksick #invisibleillness #chronicillness #chronicdisease #warriors #inspiration #ehlersdanlossyndrome #dysautonomia #spinalfusion #chiarimalformation #tetheredcord #spinabifida #brainclot #stents #vpshunt #neurosurgery #brainsurgery #survivor #intercranialhypertension #zipperhead #pioneering #advocate #spoonie #qotd
Whenever I share my medical journey, I repeatably am faced with, āI donāt understand how youāve survived; I donāt get how you were able to relearn how to walk/read/write again; how have you made the impossible, possible?ā So here it goes, Iām going to share a part of my truth with you and how Iāve been able to get to where I am today in the hope of enabling others in all walks of life…
ā¢ Bravery isnāt a lack of fear, but continuing on despite it; through it all she kept going ā¢
One of my worst post-op nightmares became a reality.
The last 24 hours have been a terrified whirlwind of exhaustion.
A routine brain catheter angiogram I had in Cambridge yesterday turned into an unexpected serious admission into majors A&E.
My joggers were soaked in my own blood, my leg was almost twice the size than it should have been, and I was so nauseated and vomited because the pain was so unbearable.
My body suffered from a major complication from the catheter angiogram and angioplasty, specifically a major haemotoma to my femoral vein and artery.
Thankfully I am now stable, the bleeding has stopped and the swelling has reduced. However, Iām still at risk of the possibility of the haemotoma clogging one of my arteries.
The reality is, simply existing with a rare condition that no doctor has a clue how to treat is beyond exhausting, difficult and overwhelming at times. Iām reminded of my struggles each day. Somedays life is all about your dreams, hopes and visions for the future. But there are somedays where life is simply just about surviving – focussing on putting one foot in front of the other, courageously continuing on this unbeknownst medical journey not knowing what challenge awaits around the next corner.
Now itās time to give my body the chance to heal from this unpredictable ordeal. Thank you all for the love and support as always and giving me strength to get through another hurdle šš¦š¦
ā¢ Laura Lee ā¢ #nevergiveup #hope #zebrastrong
āBut you donāt look sick,ā is a phrase many people living with an invisible illness have heard one too many times. It may be expressed with no malice – or even intended as a compliment – but saying such a statement can undermine the seriousness of an individuals invisible illness. Itās one of the many challenges people living with such illnesses face when it comes to communicating with friends, family and even doctors, who may struggle to understand a condition that they cannot physically see the effects of. You have to constantly advocate and explain yourself because people generally donāt understand something that they canāt see, or that theyāve never heard of before.
But what is āsickā supposed to look like? āSickā looks like me.
I know it may be hard to believe because I may look āwellā on the outside, but the reality is my body is falling apart on the inside.
Living with a incurable chronic illness means you will have good days, bad days and in between days. The baseline of wellness for us is constantly fluctuating and unpredictable: one second youāll see me doing a 5km dog walk, the next you may see me in a wheelchair or hospital bed.
The truth is, I will not allow society to pigeon-hole me into a specific label, image or stereotype of what they think being āsickā should look like. Iām not responsible for other peopleās thoughts, words, opinions and judgements – the best I can do is advocate for myself and the thousands of others with an invisible illness to tear societyās stereotype down and instead, educate.
You need to understand that life isnāt what youāre given; itās what you create, what you overcome, and what you achieve that makes you beautiful.
So what should I look like then?
Just like this šš¼A young woman on a mission…a mission to live and embrace each āwellā momentš«š¦š¦ ā¢ Laura Lee ā¢
mind, body & EDS 